Carers Lewisham Information Sheet 21. Carers of People with Dementia

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1 Carers Lewisham Information Sheet 21 Carers of People with Dementia This Leaflet is for carers of people who have some form of Dementia including Alzheimer's Disease, Lewy Bodies Dementia, Vascular Dementia etc. It will give you some basic information about dementia and where you might get more information or practical and/or emotional support in your caring role. What is dementia? Dementia is a term used to describe various different brain disorders that have in common a loss of brain function that is usually progressive and eventually severe. There are over 100 different types of dementia. The most common are Alzheimer s disease, Vascular Dementia and Dementia with Lewy bodies. Symptoms of dementia include loss of memory, confusion and problems with speech and understanding. What are the Symptoms? Problems remembering things that happened a short while ago whilst able to remember things that happened in their youth. Difficulty recognising people or remembering names Inability to find the right words for things or describe the object instead Repetition of conversations, asking the same questions in a short space of time Loss of a second language Changes in mood, personality and behaviour e.g. becomes more possessive, scared, suspicious, loss of inhibitions, changes in sexual behaviour Loss of skills such as self care, washing, dressing, putting clothes on in the wrong order, shopping and cooking. Loss of co-ordination of thought and movement with changes in posture and mood Inability to judge time and place e.g. wanders, unable to find their way home. These skills could all be lost as the dementia progresses COMMON FORMS OF DEMENTIA Alzheimer s Disease Alzheimer's disease is the most common form of dementia, affecting around 500,000 people in the UK. It was first described by the German neurologist Alois Alzheimer. It is a physical disease affecting the brain. During the course of Alzheimer s the person s brain cells become diseased and eventually die. People with Alzheimer's have a shortage of some important chemicals in their brain. These chemicals are involved with the transmission of messages within the brain. Alzheimer's is a progressive disease, which means that gradually, over time, more parts of the brain are damaged. As this happens, the symptoms become more severe.

2 Symptoms People in the early stages of Alzheimer's disease may experience lapses of memory and have problems finding the right words. As the disease progresses they may: Become confused, and frequently forget the names of people, places, appointments and recent events. Experience mood swings. They may feel sad or angry. They may feel scared and frustrated by their increasing memory loss. Become more withdrawn due either to a loss of confidence or to communication problems. As the disease progresses, people with Alzheimer's will need more support from those who care for them. Eventually they will need help with all their daily activities. While there are some common symptoms of Alzheimer's disease, it is important to remember that everyone is unique. No two cases of Alzheimer's are likely to be the same. People always experience illness in their own individual way. What causes Alzheimer's disease? So far, no one single factor has been identified as a cause for Alzheimer's disease. It is likely that a combination of factors, including age, genetic inheritance, environmental factors, diet and overall general health, are responsible. Age Age is the greatest risk factor for dementia. Dementia affects one in 20 people over the age of 65 and one in five over the age of 80. However, Alzheimer's is not restricted to elderly people: there are over 18,000 people under the age of 65 with dementia in the UK. Genetic inheritance Many people fear that they may inherit Alzheimer's disease. Scientists are currently investigating the genetic background to Alzheimer's. We do know that there are a few families where there is a very clear inheritance of the disease from one generation to the next. This is often in families where the disease appears relatively early in life. In the vast majority of cases, however, the effect of inheritance seems to be small. If a parent or other relative has Alzheimer's disease, your own chances of developing the disease are only a little higher than if there were no cases of Alzheimer's in the immediate family. Environmental factors The environmental factors that may contribute to the onset of Alzheimer's disease have yet to be identified. A few years ago, there were concerns that exposure to aluminium might cause Alzheimer's disease. However, these fears have largely been discounted. Other factors Because of the difference in their chromosomal make-up, people with Down's syndrome who live into their 50s and 60s may develop Alzheimer's disease. People who have had severe head or whiplash injuries appear to be at increased risk of developing dementia. Boxers who receive continual blows to the head are also at risk. Research has also shown that people who smoke and those who have high blood pressure or high cholesterol levels increase their risk of developing Alzheimer's. An early diagnosis will: Help you plan for the future Enable the person with dementia to benefit from the treatments that are now available Help you identify sources of advice and support. There is no straightforward test for dementia. A diagnosis is usually made by excluding other causes. The GP or specialist will need to rule out infection, vitamin deficiency, thyroid problems, brain tumours, the side-effects of drugs and depression. Vascular Dementia Vascular dementia affects around a quarter of people with dementia in the UK. This information outlines some of the causes and symptoms of vascular dementia, and offers some suggestions on how to reduce the risk of developing the condition. What causes vascular dementia? Vascular dementia occurs when cells in the brain are deprived of oxygen. The brain is supplied with oxygen by a network of blood vessels called the vascular system. If there is a blockage in the vascular system, or if it is diseased, blood is prevented from reaching the brain. As a result, cells in the brain die, leading to the symptoms of

3 dementia. What are the causes of vascular disease? Vascular disease is caused by many factors. Our lifestyle, what we eat, how much we drink and smoke all affect whether we are likely to develop vascular disease. Some types of vascular disease are hereditary. People with high blood pressure, a high level of fats in their blood and diabetes are at risk of developing vascular disease. Stroke and vascular dementia Stroke is one of the most common causes of vascular dementia. A stroke occurs when blood flow in the brain is blocked by a blood clot in an artery or when an artery bursts. When this happens the brain cells supplied by that vessel are deprived of oxygen and die. This damage is irreversible. People who have one large stroke will experience difficulties such as paralysis on one side of the body, speech and language problems, or difficulties with co-ordination and movement. Vascular dementia may also develop. Multi-infarct dementia Sometimes people may experience a series of small strokes. When these 'mini-strokes' occur they can cause light-headedness, temporary blindness and mild weakness in the arms or legs. Often the symptoms clear up quickly and do not appear to cause any long term problems. However, these mini-strokes may cause a build up of damage in the brain which can cause dementia. This type of dementia is called multiinfarct dementia. Binswanger's disease Binswanger's disease is a rare form of vascular dementia that is caused by damage to blood vessels deep in the brain's 'white matter'. It is partly a result of high blood pressure. Symptoms of vascular dementia As with other forms of dementia, people with vascular dementia will experience memory loss, difficulties in communicating and, as the disease progresses, a loss of physical abilities. However, there are some unique symptoms of vascular dementia. Because vascular dementia can affect distinct parts of the brain, particular abilities may remain relatively unaffected. This is unlike Alzheimer's disease, for example, where the disease affects the entire brain. Some people who have vascular dementia may notice that their symptoms remain steady for a while and then suddenly decline. In people with Alzheimer's disease the decline is more constant. People with vascular dementia may understand what is happening to them. This may make them prone to depression. Diagnosis It can be difficult to diagnose whether a person has Alzheimer's disease or vascular dementia. It is also possible to have both forms of dementia. New technology is making diagnosis easier. Brain imaging techniques can reveal if areas of the brain are damaged due to stroke which indicates vascular dementia. However, where there is no evidence of a stroke, it is quite common for a diagnosis of Alzheimer's disease to be made. It is important to recognise that other vascular diseases could be causing the dementia. It is very important that the type of dementia is identified because the treatments for Alzheimer's disease and vascular dementia are quite different. Treatment and prevention of vascular dementia Unfortunately there is no way to reverse damage to the brain once it has occurred. But, depending on the severity of the damage, with the right treatment it is possible to limit or delay the severity of the decline. The important thing is to prevent further damage occurring. People who have been diagnosed with vascular dementia will be treated for the disease that has led to the impairment. For example, high blood pressure can be controlled through diet and lifestyle, as well as with drugs. People at risk of stroke may be prescribed drugs that thin the blood to prevent further blood clots forming. Most importantly, we know that it is possible to reduce the risk of developing vascular dementia. People who eat a diet high in saturated fats, smoke or do not take exercise are at a greater risk of stroke. People who have high blood pressure should have it carefully monitored by their GP.

4 You can reduce your risk of high blood pressure, stroke and vascular dementia by: Not smoking Drinking moderate amounts of alcohol Reducing your intake of salt and saturated fat Taking regular exercise Having a GP check your blood pressure at least once a year Having your blood fat levels measured by your GP. Dementia with Lewy Bodies Dementia with Lewy bodies (DLB) is a form of dementia that shares characteristics with both Alzheimer s and Parkinson s diseases. It may account for 10 to 15 per cent of all cases of dementia in older people. What are Lewy bodies? Lewy bodies (named after the doctor who first identified them in 1912) are tiny, spherical protein deposits found in nerve cells. Their presence in the brain disrupts the brain s normal functioning, interrupting the action of important chemical messengers. Lewy bodies are also found in the brains of people with Parkinson s disease (PD), a progressive neurological disease that affects movement. Some people who are initially diagnosed with PD later go on to develop a dementia that closely resembles DLB. Researchers have yet to understand fully why Lewy bodies occur in the brain. DLB is a progressive disease. This means that over time the symptoms will become worse. In general, DLB progresses at about the same rate as Alzheimer s disease, typically over several years. People with DLB will typically have some of the symptoms of Alzheimer s and Parkinson s diseases. People who have DLB often experience the memory loss, spatial disorientation and communication difficulties associated with Alzheimer s disease. They may also develop the symptoms of Parkinson s disease, including slowness, muscle stiffness, trembling of the limbs, a tendency to shuffle when walking, loss of facial expression and changes in the strength and tone of the voice. Symptoms characteristic of Lewy Bodies There are also symptoms that are characteristic of DLB. People with DLB may: Find that their abilities fluctuate daily, even hourly Faint, fall, or have funny turns Experience detailed and convincing visual hallucinations, often of people or animals Fall asleep very easily by day and have restless, disturbed nights with confusion, nightmares and hallucinations. Who gets Lewy Bodies? DLB appears to affect both men and women equally. As with all forms of dementia, DLB is more prevalent in people over the age of 65. However, in certain rare cases people under 65 may develop DLB. Diagnosing Lewy Bodies DLB can be difficult to diagnose. People are often diagnosed as having Alzheimer s disease or vascular dementia. The diagnosis is made on the basis of the symptoms, particularly visual hallucinations, fluctuation and the presence of the stiffness and trembling of Parkinson s. While it is always important to get an accurate diagnosis of dementia, a proper diagnosis is particularly important in cases of suspected DLB since people with DLB have been shown to react badly to certain forms of medication. Treatment At the moment there is no cure for DLB. Recent research suggests that the cholinesterase inhibitor drugs used to treat Alzheimer s disease may also be useful in treating DLB, although they are not yet licensed for this use. Symptoms such as hallucinations may respond to being challenged, but it can sometimes be unhelpful to try to convince the person that there is nothing there. It is sometimes better to try to provide reassurance and alternative distractions. People who are experiencing stiffness owing to parkinsonism may benefit from anti-parkinson s disease drugs although these can make hallucinations and confusion worse. Physiotherapy and mobility aids may also help. When caring for someone with DLB, it is important to be as flexible as possible, bearing in mind

5 that the symptoms of DLB will fluctuate. Other forms of Dementia There are a range of other far more rare forms of dementia such as Picks Disease, Korsakoff s Syndrome and AIDs related dementia. For more information on these please look at the Alzheimer s Disease Society Web site: or contact them by phone for their Fact Sheets: Tel: Coping with Caring Caring for someone with Dementia can be extremely stressful and upsetting. You may have feelings of grief and anger about the fact that you have lost the person who love. It is easy to ignore your own needs when caring for someone with dementia and to forget that you matter, too. So it is important to take steps to safeguard your own health and well-being, so that you can continue to cope and retain your confidence. You may feel guilty, even when it seems that you are doing the best you can. Such feelings, which are very common among carers, may undermine your confidence and self-esteem and make it harder for you to cope. It is also easy to carry on without realising how tired or tense you have become. A break or holiday can help you to relax and recharge your batteries. As a carer, it is important that you have regular breaks and make time for your own needs. This may mean organising some short term care for the person with dementia. Carers Lewisham can provide help and support to YOU as the carer, we can be a listening ear; we have regular coffee mornings and support sessions; information days about how to cope; services to give you a break from caring; opportunities to meet other carers who may be in similar situations to yourself. See Leaflet 1 in your pack for more information. Tel: Alzheimer s Disease Society Lewisham and Greenwich Have regular meetings to give you more information about Dementia and how to cope. Contact: Mary Morrell Tel: alz.lewandgreen@btinternet.com What steps should the Carer take after diagnosis? It is important that the person you are caring for is helped to retain their confidence and self esteem Encourage your cared for person to tell friends and family their diagnosis so they can understand some of the changes likely to occur. It may be helpful for you both to discuss the future so that you can both be aware of each others likes and dislikes and future wishes Keep a record of events, help received, visits from services, changes in medication, GP visits etc. Remember to ask for results of all tests so that you can keep up to date. Sometimes there may be issues of confidentiality and these need to be discussed with the GP and others providing care for your cared for person so they are aware you are the carer. Ensure finances are in order and that your cared for person has a will made which reflects their wishes. You may also wish to sort out an Enduring Power of Attorney. See Carers Lewisham Information Pack Leaflets No s 7, 22 and 23 for more information on all these areas. Contact Lewisham Social Care Services for an assessment of the person you look after s needs and have a Carers Assessment to look after YOUR needs. Tel: Life Story Books This is something that you and your cared for person could do together. A Life Story book is a personal record of an individual s life which can be kept with them at all times. It could be little more than a photograph album or it could be filled with drawings, certificates, newspaper cuttings, materials, letters and anything that is special or significant for the person. It can also contain important information about such things as likes and dislikes which the person may not be able to express in speech. It can be used to jog memory and as a communication tool. The book can be added to overtime. It could include

6 Family Background Family Relationships Friends Significant events, births marriages deaths Belief Systems, religious, moral, political Hobbies, work education, Holidays Likes and dislikes: food, music, books TV, colours etc Instructions around a person s individual needs/requirement Don t be afraid to be creative! Put in anything that helps paint a picture. Some good reasons for compiling a Life Story Book: It provides an opportunity for communication It helps strengthen a person s identity and self esteem It gives something positive and tangible for carers to be involved with It helps care workers to have a respectful awareness of a person s history and identity It helps keep memories alive Problem Areas Some Suggestions to help Clothes If your cared for person has difficulty with their clothes you could help by choosing their clothes and laying them out in the order they need to be put on. It is a good idea to avoid clothes with complicated fastenings, replace buttons, zips and buckles with velcro. Washing If this is a problem gently remind your cared for person what to do, you may find it useful to demonstrate such as brushing your teeth in front of them. Run them a nice warm pleasant smelling bath. Remember that they may need help to wash because of physical difficulties. Shaving It may be a good idea to buy your cared for person a battery operated or electric shaver if he has started to have problems with wet shaving. This will also make it easier for you to shave him if he becomes unable to do it for himself. Toilet problems You may need to give the person a reminder to use the toilet throughout the day and especially before they go to bed. You may find it helps to leave a light on at night and make the bathroom door noticeable e.g. paint the door a different colour. Leave the toilet seat up to avoid accidents. Eating Have regular meal times and eat with your cared for person if possible. Spoons are easier to manage that a knife and fork. Spoon feeding may become necessary. It is a good idea to check that their dentures fit. Keep food simple and easy to chew. Regular drinks are very important. Driving The DVLC at Swansea and the insurance company must be informed of the diagnosis. If safety is an issue them it is advisable to talk to your cared for person about giving up driving. If you meet with reluctance get help from other family members or an authority figure such as a GP. Smoking and Drinking Alcohol in moderation is fine. Smoking, however needs to be under strict supervision for safety reasons. Wandering Try to find out why someone is wandering; they may be bored, restless or looking for things that they have lost. A curtain can disguise a door and act as a distraction. If wandering is a problem and there are concerns for their safety it may be preferable to lock the doors. However this should be done with caution and only when absolutely necessary. At all times you should ensure that doors can be easily unlocked in case of emergency. It is preferable not to lock someone with dementia in alone. Sleep patterns Yours cared for person may having disturbed sleep as they may be looking for the toilet; has slept too much during the day; goes to bed too early; is uncomfortable; or wakes up frightened. A low wattage lamp by the side of the bed and gentle reassurance may help them to settle back to sleep. If this continues it may be worth talking to your GP or Older Peoples Mental Health Team about other ideas. Clinging Behaviour It can be difficult to manage if the person you

7 care for won t let you out of their sight. However it is essential for YOUR health and well-being that you have time for yourself. If you don t look after yourself you could get ill and be unable to care for the person anyway. You must investigate getting a break. A sitter could come into your home to take care of your cared for person for a few hours. There may be an opportunity for your cared for person to go to a regular Day Centre. Also your cared for person could have a break in a residential care home so that you could have a proper holiday. Sometimes using these services can be difficult and carers often feel guilty, however having a break is essential for both YOU and your cared for person. Accusations of theft Sometimes this happens because the cared for person has forgotten where they have put something. Denying you have taken things can cause someone to become more agitated and distressed. It may help if you could help the person look for the things which they say have been taken. You may find that the person has hiding places where they regularly tidy things away. Your cared for person is frightened someone is coming to get them or there are people in the house They could be suffering from delusions. These are imaginary ideas but are very real to the person suffering from them. They may be caused by an infection (especially a urine infection) which is making them worse or that the dementia has progressed. Sometimes it could be something in their home. For example a man with dementia kept saying that he saw rats running around. It turned out to be the swirl patterned carpet that was upsetting him and once a plain rug was put down over the carpet the delusions stopped. Talk to your GP or contact the Older People s Mental Health Team for advice. Sex This is a very sensitive and private issue, with no simple solutions. There are trained people you could talk to about any sexual problems you may be experiencing. Talk to your GP or Older Peoples Mental Health Team. (See contacts) Inappropriate behaviour Sometimes people with dementia forget where they are and can do things such as expose themselves in public. Situations like this can be very embarrassing and it is best to remind your cared for person gently that this is not the time or place. However if the police do get involved if you explain the situation they will in the main be very understanding and deal with you and your cared for person with sympathy. It is important to note that this does not lead to harmful sexual behaviour. Aggression If the person you care for has an aggressive outburst it is best not to respond with aggression yourself. Over time you may notice things that trigger these episodes, which can then help you avoid them. If episodes of aggression become frequent you should talk to your GP or the Older Peoples Mental Health Team. (See contacts) Trips and Falls and other hazards Look for potential hazards and take preventative action. Do all fires have fire guards? Are carpets and rugs secure? Are there any trailing wires? Are stairs and passageways uncluttered? Are kitchen appliances safe? It may be possible to remove some hazards. Some will need some specialist items that can be found in DIY shops. CONTACTS Older Adults Team Services: See Leaflet 3 Tel: and ask for the Older Adults Duty Social Worker. Older Adults Mental Health Teams Services: Supports older people with mental health problems and their carers. Tel: and ask for the Older Adult Mental Health Team for your area. Alzheimer s Society Lewisham and Greenwich 52 Deptford Broadway, SE8 4PM Tel: Mental Health Foundation all_about_dementia.pdf Useful booklet about Dementia